Individual, but Shared, Experiences with Breast Cancer

Each year in the United States, about 266,400 people receive a breast cancer diagnosis, according to the Centers for Disease Control and Prevention.

Early detection of breast cancer can lead to better outcomes for people living with the condition. The 5-year relative survival rate for people with localized invasive breast cancer is 99%, according to the American Cancer Society . That rate drops to 30% if cancer isn’t diagnosed until it has spread to distant parts of the body.

The face of breast cancer is sometimes not what one expects. There’s a common perception that breast cancer only affects older women. But each year, about 2,400 men in the United States are diagnosed with breast cancer. Although the median age at diagnosis is 62 , some people are younger than age 45 at the time they’re diagnosed.

A note on language

We use “women” and “men” in this article to reflect the terms that have been historically used to gender people. But your gender identity may not align with how your body responds to breast cancer. Your doctor can help you better understand how your specific circumstances will translate into breast cancer risk factors, symptoms, and treatment.

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The older you get, the more you will be forced to spend on healthcare. A couple retiring at age 65 in 2018 will spend $280,000, on average, on medical costs throughout their retirement, not counting the expense of over-the-counter medications or the cost of living in a nursing home, CBS News

Breast cancer is the second-leading cause of cancer death among all women. Looked at more closely, there’s a more in-depth picture to be found. Among Hispanic women, breast cancer is the most deadly of cancers. Black women have the lowest breast cancer survival rate among all racial or ethnic groups, regardless of stage of diagnosis.

Cancer can be easier to treat if it’s caught early. But those who receive the diagnosis, even at an early stage, often have a complicated emotional and physical path through treatment.

Austra Health spoke with four people with a recent diagnosis of early stage breast cancer. They shared their personal stories of the challenges and misconceptions they’ve faced, as well as the places they find hope in the journey.

Editor’s note: These interviews have been edited for length and clarity.

Kenneth Nelson: I wish I would’ve known that men do get breast cancer. I think I knew it, but I didn’t understand there’s a community of men out there that had breast cancer or had gone through it. You don’t really hear about the impact on men.

Kelly Key: [I wish I knew] that you can get breast cancer at any age. It was so shocking to me when I felt a lump in my breast. I did research and thought about it for a week after that.

I was like, is this pretty serious? I don’t know what to do. I didn’t know anyone that had gone through that. I went to the doctor and got a checkup and she said, oh, it’s probably just a cyst because of your age, but let’s get an ultrasound just to make sure.

It turned out I had cancer. I found out that exact same day. I thought breast cancer only happened to women over 50, or not when you’re in your thirties, or if it did, it’s very rare. But it’s actually getting really common these days.

So, I wish when I was in high school, college, there were more places where you could learn about breast cancer, how to do self-exams.

Latrese Thomas: That there is a difference between genetic disposition and genetic inheritance. There are certain markers that pretty much definitively tell you that you’re more than likely going to have cancer, but then there’s genetic disposition, which I learned later.

I don’t have any of the genetic markers, but we have extensive family history of breast cancer. I got my BRCA testing and I’m like, that’s great. I don’t have the BRCA gene. But that just tests for a small subset of breast cancer.

Rebekah Jensen: I wish I would have known how prevalent breast cancer has become. I was diagnosed at the age of 39. I’m the youngest of five girls. I think that we all do this thing of thinking that it can’t happen to me or won’t happen to me.

Just knowing that it can, and that, in a woman’s lifetime, we have a 1 in 8 chance of it happening and that it’s the second leading cause of death for women. Not that I would’ve changed anything else, I just would’ve wished I had known that because now I certainly do.

Jensen: What’s been most beneficial and helpful to me is really just being there, lending your ear, talking. My biggest therapy has just been [being] able to voice it, speak about it, talk about it.

Many people deal with their diagnosis very differently. Some people want to stay quiet their entire diagnosis. For me, it’s been like a purging. Being able to talk about it has been therapy, being able to cry about it. Just having my friends and my family.

“What helped me the most was having people check in on me. It’s not even about gifts, like flowers or something, but just knowing that while you’re going through the fight that you have people to fight for. That really gave me encouragement.” — Kelly Key

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Key: Cancer is a very scary thing, especially when it just comes up. I had never had any health issues, so having something this big come out after having nothing my whole life was very shocking. It was very lonely at the same time.

What helped me the most was having people check in on me. Just positive reinforcement. It’s not even about gifts, like flowers or something, but just knowing that while you’re going through the fight that you have people to fight for. That really gave me encouragement.

I was an advocate on Instagram. People my age are a little bit more open to experiences that they’re going through and sharing it.

I know I’ve helped other people throughout the process. I’ve connected with a lot of people going through the same things that I have. People would like my pictures or put comments on there, like “Keep going,” “You’ve got this.” I had someone I went to grade school with send me this handwritten note and a really cute beanie.

People you don’t expect to reach out and actually care. That meant the world to me. Little words of affirmation go so far.

With breast cancer, the treatment’s pretty long. Everyone reaches out at the very beginning. Keep that consistent throughout the entire treatment. Keep checking up on the person going through breast cancer. Because it’s crazy emotions. Some days you’re feeling great, some days you’re not, and you’re tired at the end of it.

Thomas: Listen. A lot of times people listen to respond or to comfort, and there’s really no comforting in this process, right? No matter where you are in the process, it’s a hit. And once you’ve been diagnosed with cancer, whether you go into remission and you become a survivor, cancer is always sitting in the back of your mind.

So just allow the person to feel all the feels and to process this at their own rate because things tend to happen rapidly once you’re diagnosed.

Nelson: Listen to where they are in the moment. Because it’s an emotional rollercoaster.

Sometimes people don’t want to be bothered. Some people need help. Sometimes they may be in an emotional state. Just be prepared to jump on the rollercoaster with them.

Jensen: I consider myself a very independent, strong person. And when you’re met with such a diagnosis, you realize your limitations. I’m so thankful for the family that I have and for my husband and my friends. To be able to lean on my close community. That’s been my biggest strength.

My mom comes. I’m grateful to still have my mother in my life, and she comes and cooks for me and just is there for me. It means the world to have that kind of support.

Certainly communicating with others who have the diagnosis in navigating this whole process [is a source of support]. When I was first diagnosed, I was diagnosed at the age of 39, stage 0 . I was told by many doctors this is just going to be a bump in the road. I was even told that stage 0 was really not considered cancer.

So, communicating with my friends who were telling me you should have a patient navigator. You should do these things. Because when my second diagnosis came along, a year and a half after my first diagnosis, I didn’t know these types of things.

When you talk to your friends that have already gone through these things then you’re a little less lost. And I would say for about 6 months, I was lost.

My biggest advice is to talk to others that are going through these things that you’re going through.

Key: I’m a strong person. I’m a pretty confident woman, and I have a really hard time asking for help. Most of the support came from my direct family. My mom, my boyfriend was amazing, my sister. Those are the people that were really in it with me.

It’s very important to have support because obviously there were days that I needed it, but couldn’t ask. And so having them recognize where I’m at and taking initiative to ask me if I needed anything.

My boyfriend was awesome. He really tried to make sure I had some sort of normalcy while I was going through chemo especially. He made me get up in the morning and go for a walk with my dog every single day, just to have a bit of a routine so I wasn’t in bed all day and had something to look forward to. Having that person to hold me accountable.

I didn’t go through a serious depression. Of course, I’ve had bad days, but I could see if you didn’t have that person pulling you along on those tough days or just checking in, it would be very easy to just lay around and not want to keep going.

I decided to do a breast cancer walk. It was in November, I was diagnosed in June. It was important for me to find a little bit more of a voice in the breast cancer community.

It was getting the sense of fun and connecting with people who are going through the same thing. It was super important for me.

Thomas: I needed my girlfriends more than ever. Something so inherently that made me, I felt, a woman, I knew I was going to lose. I pretty much made my decision early on. And I didn’t want anyone to tell me I was still going to be beautiful on the inside. [Editor’s note: Latrese had a bilateral mastectomy, which involves the removal of both breasts.]

I needed to process [losing] something that was part of my sexy, part of my womanhood, to me.

I’m sure there are people who have done this by themselves. I can’t even imagine. I’m fortunate enough to have three mothers. I have three fathers, all living, all who have been right by my side.

I have an amazing church community. I have amazing girlfriends. My kids, everyone was so supportive.

For those that don’t have a close immediate family, there are so many organizations. I went on Instagram at first because although my family was close to me, my maternal grandmother and I are the only two survivors in our family, out of six family members that have been diagnosed. And my grandmother has dementia, so I really couldn’t talk to her about it.

So no one in my immediate circle was familiar with the process. So I went online and there’s the For the Breast of Us and The Breasties communities. Reach out and connect and follow some of those pages.

Support is important because this is heavy stuff and a lot of major decisions have to be made. And you feel alone in this. You will feel alone.

Nelson: I think it’s very important to have support because those are the people that help you when you are at your lowest and can help you and stand for you and uplift you.

For me, I turn to my family and my friends, but I also know there are support groups as well that you can turn to.

Thomas: The first challenge was realizing I had to make decisions very quickly. I knew it was cancer. But [within] days, you have to go have this biopsy and then you have to, well, the cancer is here and here, so do you want a [unilateral] or bilateral mastectomy? And do you need radiation? You make all of those decisions within a matter of weeks.

So you go from being a healthy woman walking around in the world to I have cancer and now I need to figure out with my team how I’m going to treat it in a matter of weeks from diagnosis.

I leaned into my faith. I was very fortunate to have a team around me. My medical team was amazing. Everyone got on the same page quickly.

At first they were like, it’s not necessary for you to have a radical bilateral mastectomy. Once they were in there, though, and they found out the extent of the breast cancer in my right breast, my oncologist said it was a wise decision. And that’s just my faith. I just really prayed about the decision.

I had stage 0 ductal carcinoma. However, my cancer was over 13 and a half centimeters of my breast. And it was in three different quadrants. When they biopsied it, it had the markers of triple-negative breast cancer .

So this is cancer that didn’t come up on a mammogram. Had I waited until my next mammogram, I would’ve definitely had triple-negative breast cancer that my oncologist is certain would have metastasized. [Editor’s note: ‘Metastatic’ refers to cancer that has spread from its original site to other parts of the body.]

That’s how much I leaned into my faith in believing that I was going to be healed and that everything was going to be OK.

Key: It was the timeline that was the most shocking. I remember sitting in the doctor’s office and they said it’s going to be about a year of treatment. I have to completely stop everything in my life.

Obviously, cancer’s taken so much from me, but right before I was diagnosed, my boyfriend and I sold our house and started traveling full-time in an RV. It was really important for us to see the world after the pandemic and get this sense of adventure and fun. Obviously, I’m very grateful that I got the opportunity to do that, but that had to be cut short.

The lifestyle change was very difficult because I was at the highest of highs that I have been at in my life, having so much fun and adventure, and then the lowest of lowest and it being completely taken away from me.

Also finding out that I probably can’t have kids was very difficult for me. I’m 33 and needed to make up my mind if I was going to have kids in the next couple years. Having that choice taken away from me was very difficult.

I can’t dwell on it because it is what it is. Especially for the duration of the treatment, I just had the mindset, I gotta give it my all for one year, just focus on my health and my well-being. I just turned it right into that.

Nelson: I think one of the most challenging things is when people come up to me and say I didn’t know men could get breast cancer.

So trying to have men and their diagnosis be in the same conversation as well so it’s talked about.

Jensen: I’ve been able to, for the most part, handle my chemo treatments very well. But I think the biggest challenge has been the body changes. I had bloating this morning. I was putting on makeup and my face feels like a round ball.

I don’t look like myself. Losing your hair, this image, and this idea of what you should look like or what you look like when you feel best, and you can’t control that. That is really hard.

I put on some makeup every once in a while. Also coming to realize that I’m not my hair, I’m not my face. I am deeper than those things. And you certainly take a deeper dive and journey into how you perceive yourself and your self-worth.

Nelson: I meditate and I work out. I have happy hour conversations with my friends.

Key: I’ve always been active in my life. When you’re diagnosed you find out that your lifestyle can help you fight cancer. So self-care, for me, the number one thing is just working out 4 to 5 days a week.

I love snowboarding. I just find peace and calmness in the mountains with no technology.

Eating organic foods is another way that I really practice self-care. Rest, as well. Listen to your body, take naps when you need to help lower your overall stress levels and just feel better about yourself.

I’ve found your skin changes a lot during chemo. I’ve had a really fun time with my skin regimen and trying different organic or clean products to use on my face and in my body.

Jensen: I have a body care line that is about self-care. It’s become about that.

I did not realize that chemo dries out your skin like crazy. Your cuticles — I’m getting brown on my fingers. I’m just not myself. So we can have all these products that make us feel good, but actually putting on my products and my skin care, I forget how good it makes me feel.

So taking care of my dry skin because I can’t control my hair going away. I can’t control my puffiness and bloating. What I can control is my dry skin. I take the time to do that and speak kindly to myself when I do.

When your body’s changing, still loving yourself and being kind to yourself. I would say being kind to myself and to my body and speaking kindly to her.

Thomas: In little ways and in big ways. I don’t prohibit myself from having or doing anything that I really want to do. If I want a glass of wine, I’m gonna have a glass of wine.

I also take time with my family. I have three daughters, so I like to spend time with them individually and spend time with them together. And I take time by myself. I have a staycation. I go on girls trips, I get away.

I do the things that just allow me to just be Latrese and not be responsible for anyone else in that moment.